Hi-I'm new to this forum. My history was Fibro 1998 (started with headaches, neck pain, stiff neck, spasm in neck then spread, system in over drive, insomnia), optic neuritis 2006 with vision loss, Extreme brain fog, eye pain, foot drag- hand jerking, neck jerking , some leg twitching- this was minor until neurological explosion/MS flare? Seemed to powerful to be a herx from herbal lyme protocol in 1997- I had an explosion of neuro symptoms: balance, jerking/twitching increased alot, problems speaking, extreme brain fog, balance, gait, hyper reflex's, no sense of spatial , some numbness but not lasting. Took 5 months to recover from that(stopped all the herbs at time) but not back to baseline. LDN 1 year and was stable but did not improve-still bad brain fog, leg twitching etc. Declined fall 2009- more jerking, twitching, felt weak ,bad brain fog/cognitive. November 2009 did fungal treatment/candida of flagyl for 8 days/diflucan 3 weeks- huge reaction to flagyl by day 8 tongue turned yellow, intense brain fog/non functional, stopped sleeping, lost all taste all appetite. through in a high temp sauna Was really sick after those drugs and it feels like it triggerd an MS flare? Became non functional by end of December/home bound: jerking /twitching/weak neck, weak leg, arms, gait off , balance, coordination, brain fog, head dizzy and shaking inside, eye pressure/pain ,neck jerking huge incrase , total insomnia, dizzy to the point of difficulty walking, now numbness on left side that has not gone away-arm/hand/foot/leg. Some on right-can't drive or function-need to lay down alot because of weak neck and head pressure- etc. still feel like I'm declinging 3 months later. I was working in November (from home) now I'm on a LOA for medical.
I have an appointment with a neuro next week/will get another MRi (but no contrast die/gadolinium- I also felt like I had a reaction to the contrast die !)
Now my question-- does this sound like MS? 2006 and 2008 normal MRI's.
Friends say I need to do heavy duty abx with the famous intense LLMD's. I am scared to death since both herbs and now drugs have triggered a neurolgical explosions/flares from hell. 3 months later this is still gong. I feel like my body can't tolerate the abx at this point. I almost felt close to seizures the way my head jerks forward and pressure in eyes/ brain at time. And I'm chemically sensitive/always been sensitive to drugs. My genomics liver panel shows I don't detoxify phase 2 /medications.
For those of you following the abx route on wheldon protocol or lyme protocols= have you heard of people with reactions like mine to abx? My fear is that feel so much worse over past 4 years from tryng to treat. I'm fearful since I'm not recovering this time and abx would make far worse. I know they say you have to get worse before you get better-
How successful has abx treatment been in general for MS symptoms/neuro from your experience following this and the wheldon/cpn boards? Have some people become much worse a a result of treatment? I'm terrified of how nonfuntional sick I am right now, but terrified of putting anythng into my body, and terrified of the whole IV ABX/LLMD from NY who I'm scheduling an appointment with.
Any insight would be greatly appreciated!
P.S. I remember twitching in college when I was 22 in my legs or something strange, also had headaches up back of my head since I wa young, now I'm 48--so I wonder is this lyme/infection or something I've had all along?